I got the phone call we had been waiting for. I'm not really sure what good news would have been, but the nurse confirmed what I had become pretty confident of. The episodes are Infantile Spasms. The chaotic brainwaves confirmed what I knew in my heart, but somehow hearing the diagnosis makes it a little more of a reality. Sad and disappointed, I sit and snuggle my sweet little baby doll.
But we're making good progress. This isn't fair.
Everything I read has such disturbing news. "Little Spasms: Big consequences", "severe and catastrophic", "high risk of mental retardation" (I'll go off on a tangent on this one at some point), "difficult to control and even death". All of these make me ill. However, I did come to the realization and told Shawn the other day that we have already been and are in the catastrophic department. I've expected some bumps along the road, but not a whole other beast to deal with. We've been doing so good and making so much progress that I wasn't anticipating a swing back in this direction so far. But here we are at the bottom again.
The nurse let me know that our neurologist will be calling us tomorrow to discuss medication. That has me all disturbed too, because the 2 main options could wreck havoc on all her other systems, and I already know that they usually don't take the whole body into consideration. But, the only goal with Infantile Spasms is 100% seizure control.. One of the treatments is a hormone therapy. That makes the hair on the back of my neck stand up. I guess I won't buy worry until it comes. Who knows what the doctor's recommendation will be.
Sure enough as I was reading, it says IS occurs in anywhere from 1 in 2,000 to 4,000 babies, with it being more prevalent in boys that girls. Yep, that's our rare little lady for you! All I know is once she kicks this all, she'll beat the crap out of any boy that tries to mess with her. She is so strong and one tough little cookie!
"Though sorrow may last for the night, JOY comes in the morning. " We're waiting for that!